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I'm new to this forum. And a long term survivor of 23 years. It seems this past year everything is beginning to catch up. And I mean everything. Fortunately CD 4's remain stable in the 700's, viral load below 50, and percentage in the low to high 30's.

But this year I have had strange skin rashes. Biopsies have show follicular involvement, or folliculitus. Been treated with lots of topicals, prendisone, antibiotics. Not much improvement. Was tested for food and chemical allergies, and they came back showing moderate reactions to wheat, corn, dairy products. Major reaction to polysorbate 80 an emulsifier found in lots of things from medications including some HIV meds, ketaconazole cream, over the counter aspirins and antihistimines: personal products like shaving cream, toothpaste and lotions; to foods like ice cream. After I took these out of the equation, rash seemed to clear up some. But still have it. Latest biopsy indicated something auto immune because of a lot of white blood cells at base of follicle. Also, should say I tested a false positive earlier this year for lupus, a test which probably should be retested soon.

On top of this I tested positive for Grover's a skin disease with no known cause or cure. Anyone else have this? It is awful.

Guess I'm just seeing if other members are having strange skin stuff pop up all of a sudden.

Also, I am at a stage three kidney function out of five, meaning they are functioning moderately. My GFR or filtration rate has been below 50 mainly in the 40's for years. And creatinine between 1.5 and 1.7. By Medicare standards anyone under a eGFR of 50 has chronic kidney disease. My HIV doctor and Neprhrologist both do not seem to concerned about these numbers as long as they remain stable.Just interested in other members with similar issues.

I'm mostly frustrated with the skin stuff. Any words of wisdom would be greatly appreciated.

By the way, my derm thinks I may be undergoing some sort of auto immune reconstitution because of a dramatic drop in my t cells recently due to a sinus infection from a very high number, then returning to a more stable number a few weeks later.

Jm; I've been having skin problems for 4 or 5 yrs. now.It drives me CRAZY ! (not a far trip mind ya !) LOL. I wake up every day with a new itch that can't seem to be scratched. Red itchey bumps that just pop up here & there & some times every where, even on the head of my little friend. It got so bad they took away my back scratcher !Going in the hot tub makes them pop up too .OOOOOOOH the itch !!!!Had a biopsy done a couple of years ago, diagnosis; Acute Folliculitus.OK so i found out what it was. (finally) !but Arizona A.H.C.C.C.S. (medical) will not cover the cost to find out what is causing it !! (the things i could say about that place!!)I to have been through so many kinds of soap, lotions, creams, pills to controll the itch, & what have you.I finally found a perscription called FLUOCINONIDE CREAM USP, 0.05 %.for hot spot treetment. i dab a little on & presto those spots dissapear.in just a few hours. Toooo bad i couldn't bathe in it. lol It gets a little tiring at times, but i still keep going forward. Your not alone with this problem. Thanks for posting & welcome to the forums. Tom

I don't have issues with my skin right now, and I just wanted to welcome you to the forums. Feel free to chat about anything here.

May I ask, what is causing your kidney disease? Long-term HIV? Just curious. Again, welcome. Luv,Betty

Thanks Betty for the kind welcome.

Most probably what is causing my kidney problems, according to my nephrologist is having the virus for such a long time, but mostly, the kidneys having to process the multitude of meds I take. My eGFR or filtration rate has been in the low to high forties for a few years now, and creatinine between 1.5 and 1.7. From what I understand any eGFR below 50 according to Medicare standards means chronic kidney disease. My nephrologist said he is not worried as long as everything stays stable. He retests kidney functions every six months.

Hope this helps.

Thanks again Betty for the warm welcome. And I'm so glad you aren't suffering from any skin issues right now. Here again, the derms and specialists don'r really know if it is the HIV, auto immune dysfunction, or a number of other things. Hope you stay clear of this.

Jm; I've been having skin problems for 4 or 5 yrs. now.It drives me CRAZY ! (not a far trip mind ya !) LOL. I wake up every day with a new itch that can't seem to be scratched. Red itchey bumps that just pop up here & there & some times every where, even on the head of my little friend. It got so bad they took away my back scratcher !Going in the hot tub makes them pop up too .OOOOOOOH the itch !!!!Had a biopsy done a couple of years ago, diagnosis; Acute Folliculitus.OK so i found out what it was. (finally) !but Arizona A.H.C.C.C.S. (medical) will not cover the cost to find out what is causing it !! (the things i could say about that place!!)I to have been through so many kinds of soap, lotions, creams, pills to controll the itch, & what have you.I finally found a perscription called FLUOCINONIDE CREAM USP, 0.05 %.for hot spot treetment. i dab a little on & presto those spots dissapear.in just a few hours. Toooo bad i couldn't bathe in it. lol It gets a little tiring at times, but i still keep going forward. Your not alone with this problem. Thanks for posting & welcome to the forums. Tom

Tom,

Thank for the nice welcome. Aren't these skin issues a drag!! I too have had biopsies showing acute folliculitus, the last one showing a lot of white blood cells at the base of the follicle indicating to my derm a possible auto immune issue. Who knows!!! I do know that my folliculitus tends to be aggravated by heat, so sitting in the hot tub might not be the greatest idea.

Thanks for the tip about the fluocinonide cream. I see my derm tomorrow. I'll see if she will prescribe it. I have also heard Hibaclense lotion (sp) sold over the counter dabbed on each spot helps make them disappear. But it is all an individual process I've found out.

I'll share any new information I receive from my derm and specialists as I get it.

Just a quick reminder of my Long Term Status.HIV + 14 yearsStarted out with cd4 of 8 14 years ago

I have been battling several Long Term Survivor issue for several years. Osteoporosis, Coronary artery disease, diabetes and chronic kidney disease.

I to have noticed the skin problems occuring more and more. I also have had folliculitis, skin cancers, rashes and other skin alllergies. I too am in Stage 3 of Chronic Kidney disease. GFR of 30-40. Creatinine levels run between 1.7 and 2.0. I have allso had a positive ANA which is one test for Lupus but my Doc also said it was false positive.

These issue are becoming more and more prevalent in long termers.

« Last Edit: November 20, 2009, 06:53:28 PM by smalltown66 »

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Lifting the weight of the world sure is easier with others with the same goal.

Just a quick reminder of my Long Term Status.HIV + 14 yearsStarted out with cd4 of 8 14 years ago

I have been battling several Long Term Survivor issue for several years. Osteoporosis, Coronary artery disease, diabetes and chronic kidney disease.

I to have noticed the skin problems occuring more and more. I also have had folliculitis, skin cancers, rashes and other skin alllergies. I too am in Stage 3 of Chronic Kidney disease. GFR of 30-40. Creatinine levels run between 1.7 and 2.0. I have allso had a positive ANA which is one test for Lupus but my Doc also said it was false positive.

These issue are becoming more and more prevalent in long termers.

Thanks for the response. Sounds like we have some things in common. Skin, kidney, false positive ANA. I'm sorry to hear about all the other things you are dealing with too. Just dealing with one is enough..

Since we have some health issues in common, it would be great to hear from you time to time to see how you are doing. Also we can share any new treatments we've discovered especially with kidney and skin conditions.

It definately sound like we have a lot of the same issues. I am going to see the nephrologist in 10 days. Hopefully I may have more answers then. I will keep in touch and keep updated. Thanks for the support

Smalltown66

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Lifting the weight of the world sure is easier with others with the same goal.

I'm new to this forum. And a long term survivor of 23 years. It seems this past year everything is beginning to catch up. And I mean everything. Fortunately CD 4's remain stable in the 700's, viral load below 50, and percentage in the low to high 30's.

But this year I have had strange skin rashes. Biopsies have show follicular involvement, or folliculitus. Been treated with lots of topicals, prendisone, antibiotics. Not much improvement. Was tested for food and chemical allergies, and they came back showing moderate reactions to wheat, corn, dairy products. Major reaction to polysorbate 80 an emulsifier found in lots of things from medications including some HIV meds, ketaconazole cream, over the counter aspirins and antihistimines: personal products like shaving cream, toothpaste and lotions; to foods like ice cream. After I took these out of the equation, rash seemed to clear up some. But still have it. Latest biopsy indicated something auto immune because of a lot of white blood cells at base of follicle. Also, should say I tested a false positive earlier this year for lupus, a test which probably should be retested soon.

On top of this I tested positive for Grover's a skin disease with no known cause or cure. Anyone else have this? It is awful.

Guess I'm just seeing if other members are having strange skin stuff pop up all of a sudden.

Also, I am at a stage three kidney function out of five, meaning they are functioning moderately. My GFR or filtration rate has been below 50 mainly in the 40's for years. And creatinine between 1.5 and 1.7. By Medicare standards anyone under a eGFR of 50 has chronic kidney disease. My HIV doctor and Neprhrologist both do not seem to concerned about these numbers as long as they remain stable.Just interested in other members with similar issues.

I'm mostly frustrated with the skin stuff. Any words of wisdom would be greatly appreciated.

By the way, my derm thinks I may be undergoing some sort of auto immune reconstitution because of a dramatic drop in my t cells recently due to a sinus infection from a very high number, then returning to a more stable number a few weeks later.

Thanks,

Jm1953

This was posted in the wrong thread, so, I'd like to continue this here in the correct thread, so here go's for the original OP Jm1953

Reply with quote Modify messageQuote from: jm1953 on Yesterday at 11:16:31 pmI have stage 3 kidney disease meaning i have moderate kidney function. Think it goes to stage 5 when dialysis is employed. Out of curiosity, how is your creatinine (sp) and your GFR functions? Do you know what stage you are at? And has your doctor looked at your cocktail or other meds your taking that you maybe can live without that are putting more stress on your kidneys? And have you been referred to a nutritionist or kidney class to know a good kidney friendly diet to be on? All I know is I drink about eight glasses of water a day, and have been eating a lot more healthy and my kidney functions are stable.

I hope all goes well with yours. Keep me in the loop if you will?

All my best,

Jeff

As far as I know right now, my Nephrologist Doctor says that my creatinine (sp) and your GFR functions are very high, higher than normal, ( i don't remember the exact numbers) and my protein-levels are 100+ and my urine is very cloudy, I have a lot of skin issues as a result of this, so far a ultrasound and MRI has been done, and they didn't like what they saw on both kidneys, right now they have no idea what it is, they saw ( maybe a nipple-shadow, but something is there), so now I'll be doing some biopsy's in early spring, my ID Doctor thinks my TRUVADA my be the problem, as well as my long term use of HAART-HIV+-meds thur the yrs. (I've been on meds since 1990) when I find out more info, I'll update this, but, that is all I know so far, it may be nothing at all I'm hoping, my kidney functions are stable as for right now...........

« Last Edit: December 05, 2009, 08:24:40 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Hi I am also new to these forums. I have also had very similar skin problems since about 2005. Seem it started right after I went through hurricane wilma and the massive storm surge that covered 70% of Key West when I lived there. I started getting itching that would not stop. It would sometimes look like a rash and at one point my doctor also thought it was the Truvada and took me off that but the itching persisted. I went to a dermatologist at one point and was told by that one that it was all in my head and he prescribed a pill to take at night that made me feel like a zombie throughout the day after. I found another dermatologist who seemed more concerned about getting to the root of the problem and he did not tell me it was all in my head, he actually did some biopsies of the areas that were raised and no cancer. He basically said what I had was caused from the sun as my itching was only on my arms and the back of my neck. I also had these splotch's developed that if scratch just likely would end up bleeding. I got my doctor to refer me to a specialist at the University of Miami and he too thought it was sun related and nerve related. and I was put on several things and some seemd to work. Amitryptiline works but even with the lowest dose I still feel groggy the next day. For the splotchy skin I was prescribed something called pentoxyphyline and I rarely have any splotches and when I do they are very small.

I moved to Saint Petersburg, Florida in October and I have been thinking about seeing an allergist, since there are so many of them in my area. Just haven't done it yet. I see a dermatologist here and just recently had a mosh procedure done to remove a spot that was considered I think Squamous cell and at my next appointment I am going to ask what he thinks about seeing an allergist to see if I can find out what is causing all this itching I have been having since 2005.

I have found some things already on my own. I itch when I get in contact with my 2 cats hair, I was told it was the proteins in the dander and the hair of the cat and sometimes wipe down wipe vinegar to alleve the itch. I will not get rid of my cats as they are family. I also have found that when I eat chocolate or drink coca colas I start itching within about 30 minutes of consuming them and the itching is confined to the arms and back of the neck.

I have also used the flucanosole and it did not seem to help much plus you are warned not to go out in the sun, which is almost impossible living here in Florida.

My other problem with seeing the right doctors is I have medicare and medicaid and medicare pays 80% of the charges and medicaid usually picks up the remainder but more and more doctors don't have contracts with medicaid and will bill the patients and it is frustrating trying to call medicaid to ask what to do. I did Finally get in touch with someone from medicaid who said that normally the doctors office could send the remainder of the charges to them and they will see if they would pay. I am going to have to call again to ask if I can just send the bill to medicaid myself for the outstanding charges other wise I have to find somewhere else to see a doctor that accepts what medicare pays and waives the remainder. as on $827 a month disability I have nothing left after rent and bills each month to even think about paying them.

If anyone has any suggestions about the itching thing I welcome any advice.

Hi Loyd, have you asked if it might be eczema? I have it on my face and under my hair and it itches like all get out, especially when I've been in a lot of sun. I use this cream called Triamcinolone Acetonide Cream and it gets rid of it. Oh yeah if I leave it untreated it not only itches like hell but will start to bleed.

Hi I am also new to these forums. I have also had very similar skin problems since about 2005. Seem it started right after I went through hurricane wilma and the massive storm surge that covered 70% of Key West when I lived there. I started getting itching that would not stop. It would sometimes look like a rash and at one point my doctor also thought it was the Truvada and took me off that but the itching persisted. I went to a dermatologist at one point and was told by that one that it was all in my head and he prescribed a pill to take at night that made me feel like a zombie throughout the day after. I found another dermatologist who seemed more concerned about getting to the root of the problem and he did not tell me it was all in my head, he actually did some biopsies of the areas that were raised and no cancer. He basically said what I had was caused from the sun as my itching was only on my arms and the back of my neck. I also had these splotch's developed that if scratch just likely would end up bleeding. I got my doctor to refer me to a specialist at the University of Miami and he too thought it was sun related and nerve related. and I was put on several things and some seemd to work. Amitryptiline works but even with the lowest dose I still feel groggy the next day. For the splotchy skin I was prescribed something called pentoxyphyline and I rarely have any splotches and when I do they are very small.

I moved to Saint Petersburg, Florida in October and I have been thinking about seeing an allergist, since there are so many of them in my area. Just haven't done it yet. I see a dermatologist here and just recently had a mosh procedure done to remove a spot that was considered I think Squamous cell and at my next appointment I am going to ask what he thinks about seeing an allergist to see if I can find out what is causing all this itching I have been having since 2005.

I have found some things already on my own. I itch when I get in contact with my 2 cats hair, I was told it was the proteins in the dander and the hair of the cat and sometimes wipe down wipe vinegar to alleve the itch. I will not get rid of my cats as they are family. I also have found that when I eat chocolate or drink coca colas I start itching within about 30 minutes of consuming them and the itching is confined to the arms and back of the neck.

I have also used the flucanosole and it did not seem to help much plus you are warned not to go out in the sun, which is almost impossible living here in Florida.

My other problem with seeing the right doctors is I have medicare and medicaid and medicare pays 80% of the charges and medicaid usually picks up the remainder but more and more doctors don't have contracts with medicaid and will bill the patients and it is frustrating trying to call medicaid to ask what to do. I did Finally get in touch with someone from medicaid who said that normally the doctors office could send the remainder of the charges to them and they will see if they would pay. I am going to have to call again to ask if I can just send the bill to medicaid myself for the outstanding charges other wise I have to find somewhere else to see a doctor that accepts what medicare pays and waives the remainder. as on $827 a month disability I have nothing left after rent and bills each month to even think about paying them.

If anyone has any suggestions about the itching thing I welcome any advice.

Loyd

Loyd,

There is a website much like this one called the Skin Cell Forum. I am a member because I have both folliculitus and a weird, supposedly sun related disease called Grovers. This site has been invaluable to me as has this one. I've learned so much from other people going through the same thing, things they have tried and what has worked or failed. You might want to browse around the site. If you can't find it, write me back and I'll send you a link.

I was going to say for instant itch relief, a life saver for me has been Sarna, which is a lotion sold over the counter. It takes away the itch for quite awhile, and helps you sleep. Many of the members on Skin Cell with Grovers swear by it. Just a suggestion.

Let me know how things go. And I'll be interested in what your new dermatologist has to say.

THERE BACK..............kidney Stones right now I'm having a lot of PAIN, if this continues, and the 2 500mgs of Acetaminophen I'm taking just doesn't seem to keep the pain at bay ( I can only take 8 a day that's 2 every 6 hrs) then it's off to the ER, for better pain management, when I had them before, I went to the ER, and was given 4MGs of Morphine and Versed in an IV-push every 4 hrs. and I don't see the Renal Doctor till FEB 2009 ..................sigh

« Last Edit: December 22, 2009, 12:37:13 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I sympathize with you and am so sorry you have kidney stones. I had one or two a couple of years back in November and December and never have been through such agonizing pain.

I assume you had a CT Scan or ultrasound to confirm obviously. And I assume your Nephrologist has referred you to a Urologist. Having had them before you know there are procedures to get rid of them. Either having them blown apart in some kind of whirlpool with radio waves I think, or they can go in and remove them I believe. My Urologist gave me a prescription for Flomax, and told me to drink tons of water to keep things moving. Not necessarily saying that will be the treatment best for you. Also I think I was taking Vicadin for the pain. Fortunately I passed them in about one month.

Since that time I saw a nutritionist who put me on a special diet to help me from getting kidney stones again. So far it has worked, although I had a scare a few months ago thinking I had them, but it was a false alarm.

I'm so sorry you have to go through this again. Take it from me, I know what you are going through. Nothing is worse in my book.

BTW, try lying on a heating pad at night, or just soaking in a hot tub. That seemed to help my pain temporarily.

Since that time I saw a nutritionist who put me on a special diet to help me from getting kidney stones again. So far it has worked, although I had a scare a few months ago thinking I had them, but it was a false alarm.

No special diet, was told to watch dairy products, but, I'm already lactose intolerance, so no milk for me, I drink soy milk instead , the stones usually pass after about a week or so......but MAN are they painful I've had them off and on since 2000, and then again in 2004, and now, 2009, they suspect that the HARRT Meds has done some kinda damage to both my kidneys, but how much damage is yet to be found, after all of the CT-scans, MRI's and the many, many ultra-sounds I've had, as I stated above in another post, I'll find out some more info and all of this when I see the Nephrologist in FEB 2010, so I'll update again....

« Last Edit: December 23, 2009, 10:42:49 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

That was what gave me stones, or rather gravel. The gravel was painful enough.

Jeff, regarding your skin, how it that going? Just out of curiosity, have you ever been checked for gluten intolerance?

I know that some people who have Celiac Disease develop skin problems that are quite pronounced.

I was wondering if that might be compounding your problems.

It is just a thought.

Wishing you and Dennis both a speedy recovery.

HUGS,

Mark

Oh Mark, you can hijack me anytime you want

YES, was on it in 1996 to 1998, I recall that stuff use to make my piss REALLY STINK, also had many others problems due to Crixivan, also was on DDI too form 1994 to 1997, and that stuff made my piss VERY CLOUDY ......so yeah, my kidneys are shot, like many of us here I'm not sure, but, form what I've heard, you cannot come back form this after the damage has been done....

« Last Edit: December 23, 2009, 11:32:27 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Hi Loyd, have you asked if it might be eczema? I have it on my face and under my hair and it itches like all get out, especially when I've been in a lot of sun. I use this cream called Triamcinolone Acetonide Cream and it gets rid of it. Oh yeah if I leave it untreated it not only itches like hell but will start to bleed.

Best wishes,JoeJoe

Hi Joe,

Just getting to get back on the forums. I have been told by both my dermatologist in key West and the specialist in Miami that what I had was not eczema. I have used Triamcinolone and Sarna and many other things but it doesn't stop the itching. the only thing so far that has seemed to work a little is taking Amitriptyline at night which calms the nerve endings. The side effects are the groggy feeling the next day, I had also applied a muscle rub cream with a vanishing scent which worked by cooling the skin which stopped the itch. Now that I have moved to another part of the state of Florida I can't find the same type of vanishing scent muscle rub that I used to get that worked. I have been using a spray bottle with a mixture of red vinegar and water and spray on my skin to relieve the itching and it works a little.

I don't get the bleeding anymore as one of the other meds I was put on was to help either with circulatory problems or the stickyness of the blood as I used to get the red splotches that would bleed after just light scratching.

There is a website much like this one called the Skin Cell Forum. I am a member because I have both folliculitus and a weird, supposedly sun related disease called Grovers. This site has been invaluable to me as has this one. I've learned so much from other people going through the same thing, things they have tried and what has worked or failed. You might want to browse around the site. If you can't find it, write me back and I'll send you a link.

I was going to say for instant itch relief, a life saver for me has been Sarna, which is a lotion sold over the counter. It takes away the itch for quite awhile, and helps you sleep. Many of the members on Skin Cell with Grovers swear by it. Just a suggestion.

Let me know how things go. And I'll be interested in what your new dermatologist has to say.

I know what you are going through!!!!

Best always,

Jeff

Thanks Jeff,

I am going to try that site. When I did get in to see my new dermatologist for a mohs procedure I did not get to go over any of my skin problems at that time. It seems to be a busy office and things move quickly there. I am not sure if I will be going back there unless some things get resolved. After my procedure when I was checking out they said I owed $203. because they don't have a contract with Medicaid to pay the difference that is not covered by Medicare. Actually the person that does the billing said that medicaid was saying that I was ineligible for that county. When I got home and called medicaid they told me that everything was fine and I was eligible for the county I reside in and received the services in. So now on Monday I have to try and get my bill covered by medicaid before my next appointment in January with the dermatologists. I am going to try and get my case manager at the ASO that I am a client of to help find a way to submit the bill to medicaid or find a dermatologist that will bill Medicaid for the balance that Medicare does not cover.

I have yet to get involved with the Ryan White Care Council for my area, but plan to in the new year.

I understand what everyone is going through with skin issues... although my cd4's are at 1658 and non-detectable... I have itchy bumps pop up on my scalp, arms, back and torso...it seems I have a constant battle going on for over 10 years now... I was told it was my imagination from sevral Dermotologist? to folliculitus... now I have even psoriasis on my elbo... I've had more acne breakouts out of the blue than when I was a teen ager... I'll get it cleared up then all of a sudden its comes right back... I'm going to mention the cream to my Doctor that tommyj uses... maybe I'll get some relief...

I understand what everyone is going through with skin issues... although my cd4's are at 1658 and non-detectable... I have itchy bumps pop up on my scalp, arms, back and torso...it seems I have a constant battle going on for over 10 years now... I was told it was my imagination from sevral Dermotologist? to folliculitus... now I have even psoriasis on my elbo... I've had more acne breakouts out of the blue than when I was a teen ager... I'll get it cleared up then all of a sudden its comes right back... I'm going to mention the cream to my Doctor that tommyj uses... maybe I'll get some relief...

You might want to ask your doctor for some FLUOCINONIDE 0.05% (I call it medicated bees-wax)it works wonders for me, and clears up all of them dam little itchy-red-bumps, and dry spots that I geton my elbows, arms, feet, legs and trunk areas of my body

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

You might want to ask your doctor for some FLUOCINONIDE 0.05% (I call it medicated bees-wax)it works wonders for me, and clears up all of them dam little itchy-red-bumps, and dry spots that I geton my elbows, arms, feet, legs and trunk areas of my body

Hey Dennis and Mark:

Thanks for your interest and information. I have read several of your posts on the forum and you both seem like a very compassionate men, always having a caring word for everyone. A great quality to have!!!

Yes...Mark, still having skin problems unfortunately. This year I had been to three dermatologists, two of whom I don't see anymore because they seemed so disinterested. The one I see now I have more faith in, and certainly one of the most compassionate. Although, with so many derms now, it seems all of the ones I have seen take more interest in procedures, botox, sculptra, juvederm, and such as opposed to true skin workups. Cosmetic procedures are usually cash only, so I guess you can't blame some dermatologists not wanting to take the time trying to figure out mystery skin issues. I must say my current one does seem to have more interest in HIV skin issues as does her colleague, rare in the dermatology field these days I think. Actually, the best dermatologist I have ever been to works in Honolulu, and I have been sincerely thinking about flying over to see him. I used to live there. He gets HIV, and follows up with you by phone the same night to see how you are doing. A great physician and a great guy. Good reason to visit Hawaii again and see friends.

Still dealing with folliculitis, strange rashes although better, Grover's which seems at bay now, and a flare up of acne on my back. Feel like a teenager. I'm on Benzoyl Peroxide and Clyndamycin cream for that. Now trying Protopic for the folliculitis.

To answer your question about Gluten intolerance Mark, I was so desperate this summer to get some sort of resolve to my problem after practically having given up, I ran into my nutritionist in my HIV docs office. I showed her the rash and she ran a food and chemical sensitivity on me. Turns out I am allergic to Wheat, Corn, Dairy, Onions, Apples, among many more, plus Polysorbate 80 an emulsifier in just about everything from shaving cream, to ice cream you name it. I think the tests have helped with my avoiding those foods, but I still have my problems. Still a mystery.!!

I hope things are going well with you both, and you are having a good holiday. Have a great new year. Sure we will be chatting.

Just observing some folks have high t-cell counts, very high, and undetectable viral loads who are having their share of skin problems. Interesting..... just wondering if the CD 4 and viral load values have any bearing on skin problems. I assume they must.

I understand what everyone is going through with skin issues... although my cd4's are at 1658 and non-detectable... I have itchy bumps pop up on my scalp, arms, back and torso...it seems I have a constant battle going on for over 10 years now... I was told it was my imagination from sevral Dermotologist? to folliculitus... now I have even psoriasis on my elbo... I've had more acne breakouts out of the blue than when I was a teen ager... I'll get it cleared up then all of a sudden its comes right back... I'm going to mention the cream to my Doctor that tommyj uses... maybe I'll get some relief...

Interesting with your high t cells and non-detectable viral load you are having as many skin issues as the rest of us. Know what you are going through though. At least we can all relate and try to help one another.

Yep, after I left the ER yesterday, I got a prescription for Flomax, and I've drank tons of water, so far so good

No special diet, was told to watch dairy products, but, I'm already lactose intolerance, so no milk for me, I drink soy milk instead , the stones usually pass after about a week or so......but MAN are they painful I've had them off and on since 2000, and then again in 2004, and now, 2009, they suspect that the HARRT Meds has done some kinda damage to both my kidneys, but how much damage is yet to be found, after all of the CT-scans, MRI's and the many, many ultra-sounds I've had, as I stated above in another post, I'll find out some more info and all of this when I see the Nephrologist in FEB 2010, so I'll update again....

Dennis:

Hope those kidney stones pass soon. I really sympathize and am sorry you are going through all this. Glad at least we can share these experiences on the forum!!!

Gosh I feel like I'm dominating this topic with posts. For some reason I'm not getting my posts in under the right quotes. Getting dingy I guess with all this typing.

Just wanted to thank you for the recommendation of fluocinomide. I'm trying other things right now, but open to anything.

Again, try to hang in there with your kidney issue. By the way, like Mark I think, I was on Crixivan in 1996 too. Interesting we all three are having them now!!!!! I never got them while on Crixivan but I was on a study, and they kept reducing the dose. Then they took me off it completely because I became resistant to it.

Gosh I feel like I'm dominating this topic with posts. For some reason I'm not getting my posts in under the right quotes. Getting dingy I guess with all this typing.

Just wanted to thank you for the recommendation of fluocinomide. I'm trying other things right now, but open to anything.

Again, try to hang in there with your kidney issue. By the way, like Mark I think, I was on Crixivan in 1996 too. Interesting we all three are having them now!!!!! I never got them while on Crixivan but I was on a study, and they kept reducing the dose. Then they took me off it completely because I became resistant to it.

Thanks again,

Jeff

Hey Jim........ here's an update about my kidney's........ I had a Renal Doctor's appointment today, he said basically the same thing when I saw him back in SEPT 2009, I have 50 to 80% kidney function, and my creatinne level is 1.48 my protein level is high, it was 700 or 0.17 grams, he told me the the normal level should be around 300, and not 700, he said he would do another follow-up in about six months, also he didn't feel the need for a kidney biopsy unless things got worse, but said continue to take your H.A.R.R.T Meds, and take care of your body, and continue to drink lots of fluids, and don't worry so much about the number of times you go pee, in your case that's a good sign, along with your kidney stones........I ask him if I had kidney decease, and he said NO, we haven't ruled that out yet, however some of your past AIDS MEDS may have caused some kidney disfuctiion, and at this stage in the game nothing really to do but, monitor my kidney's, the good news is as long as they stay stable I should be ok, at least for now..........

« Last Edit: February 03, 2010, 04:32:58 PM by denb45 »

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Hey Jim........ here's an update about my kidney's........ I had a Renal Doctor's appointment today, he said basically the same thing when I saw him back in SEPT 2009, I have 50 to 80% kidney function, and my creatinne level is 1.48 my protein level is high, it was 700 or 0.17 grams, he told me the the normal level should be around 300, and not 700, he said he would do another follow-up in about six months, also he didn't feel the need for a kidney biopsy unless things got worse, but said continue to take your H.A.R.R.T Meds, and take care of your body, and continue to drink lots of fluids, and don't worry so much about the number of times you go pee, in your case that's a good sign, along with your kidney stones........I ask him if I had kidney decease, and he said NO, we haven't ruled that out yet, however some of your past AIDS MEDS may have caused some kidney disfuctiion, and at this stage in the game nothing really to do but, monitor my kidney's, the good news is as long as they stay stable I should be ok, at least for now..........

Hey Dennis:

Sounds like you have a good renal doctor. Your numbers are about like mine, but I am not spilling quite that much protein. He is probably correct that the meds are the main culprit in causing your kidney problems, along with other meds you might be taking like for controlling blood pressure and such. I have a friend in LA going through the same thing, and his doctor took him off a few meds that he thought he didn't need, and thought they may be part of the cause of his kidney problems. Think those were Combivir and Lycinipril.

I think there are five or six stages of kidney functions. I think I'm at stage three which means they are working moderately. Like you, my renal doctor said as long as I remain stable, meaning my GFR doesn't take a major dip, or creatinine make a major jump, or protein goes sideways he will monitor me every six months. Have you gotten rid of your kidney stones yet? I thought you said they prescribed Flomax and that usually helps you pass them, but I think makes you pee a lot too.

Sounds like you have a good renal doctor. Your numbers are about like mine, but I am not spilling quite that much protein. He is probably correct that the meds are the main culprit in causing your kidney problems, along with other meds you might be taking like for controlling blood pressure and such. I have a friend in LA going through the same thing, and his doctor took him off a few meds that he thought he didn't need, and thought they may be part of the cause of his kidney problems. Think those were Combivir and Lycinipril.

I think there are five or six stages of kidney functions. I think I'm at stage three which means they are working moderately. Like you, my renal doctor said as long as I remain stable, meaning my GFR doesn't take a major dip, or creatinine make a major jump, or protein goes sideways he will monitor me every six months. Have you gotten rid of your kidney stones yet? I thought you said they prescribed Flomax and that usually helps you pass them, but I think makes you pee a lot too.

Keep me in the loop Dennis and take care....

All my best,

Jeff

Yes, the kidney stones passed right after the New Years Holiday, I had two of them the 1st one was in Dec right before XAMS, that is when the pain was so bad I went to the ER for some pain management, when I was discharged for the ER after about 5 to 6 hrs. the ER doctor give me a script for Flomax, for about 10 days, after that, the stones were all gone, and YES, the Flomax did make me pee a lot, the 2nd bout of kidney stones weren't that bad, I had to take 1,500Mlg of Acetaminophen and that helped relive the pain, I wish I would have had the Acetaminophen the 1st time, it would have saved me a trip to the ER ,I really hated going there, that isn't a very fun place to be, I told my Renal Doctor about the stones, and he said YES, he saw them in my ultra-sound way back in SEPT 2009, so he wasn't suprized I had them, THEY ARE VERY PAINFUL to anyone who's never had them before The Folmax was only temporary, I only got 10 days worth, and my renal doc didn't feel the need for me to take anymore of the Flomax, he was kinda pissed that the ER doctor gave that to me for kidney stones, said he would have a sit-down talk with that ER Doctor

« Last Edit: February 07, 2010, 11:22:48 AM by denb45 »

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Glad the stones have passed. You are right, no one knows pain until they have had those.

Actually my Urologist prescribed Flomax for me so I would pass the stones faster. Kind of thought that was standard procedure, so I'm kind of surprised your renal doctor is not happy with the ER doc for prescribing them.

I hey Jim, it's been a while so I'd thought I keep you up to date about my kidney functions as of latejust got outta the doctors office, and she told me what they think might be the problem, but 1st let me give you some of my levels, my Creatinine level is still very high H 1.45 to H 1.48, but, both my Renal & ID Doctor think this is due to my muscle mass, as I work-out a lot ( 5 to 6 days a week) so, there is nothing to worry about, and don't suspect anything in regards to any reduced kidney functions

It's been a good 3 to 4 months and the levels seem to be stable, so that rules out any kidney biopsy in the near future, they told me to continue to drink water, about 8 to 10 oz per day and maybe a little more, I still battle with painful kidney stones form time to time, but unless I'm actually having them, they cannot do much for this, and told me that they will pass, and as for the pain....well ,I have 500mlg of Acetaminophen ,I have to take abut 3 or 4 of them to reduce the pain of the kidney stones...

So far, I haven't had them since Xmas & New years, and hope they don't come back soon...I won't see any of my doctors until late AUG 2010, and both give me a clean-bill-of-health I hope everything is going well with you as far as your kidney functions are doing...so let's keep in-touch on this subject, I'm SURE were not the only ones on this forum with painful kidney stones due to yrs of taking H.A.R.R.T Meds

« Last Edit: March 17, 2010, 02:11:00 PM by denb45 »

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I hey Jim, it's been a while so I'd thought I keep you up to date about my kidney functions as of latejust got outta the doctors office, and she told me what they think might be the problem, but 1st let me give you some of my levels, my Creatinine level is still very high H 1.45 to H 1.48, but, both my Renal & ID Doctor think this is due to my muscle mass, as I work-out a lot ( 5 to 6 days a week) so, there is nothing to worry about, and don't suspect anything in regards to any reduced kidney functions

It's been a good 3 to 4 months and the levels seem to be stable, so that rules out any kidney biopsy in the near future, they told me to continue to drink water, about 8 to 10 oz per day and maybe a little more, I still battle with painful kidney stones form time to time, but unless I'm actually having them, they cannot do much for this, and told me that they will pass, and as for the pain....well ,I have 500mlg of Acetaminophen ,I have to take abut 3 or 4 of them to reduce the pain of the kidney stones...

So far, I haven't had them since Xmas & New years, and hope they don't come back soon...I won't see any of my doctors until late AUG 2010, and both give me a clean-bill-of-health I hope everything is going well with you as far as your kidney functions are doing...so let's keep in-touch on this subject, I'm SURE were not the only ones on this forum with painful kidney stones due to yrs of taking H.A.R.R.T Meds

Hey Denb45:

Thanks for checking back in. Sorry I couldn't respond sooner. Your Creatinine levels don't seem that high to me. The reference range my doctor's lab uses is 0.5-1.5. Mine hover around 1.5. However sometimes, with stones it has gone up to 1.7. My doctor doesn't seem too concerned like yours unless my Creatinine goes way out of wack. He considers my labs acceptable as long as they remain stable like yours. I see him every six months. I'm sure all of the meds we are taking are taking a toll on our kidneys and raises the Creatinine level. He doesn't pay much attention to the GFR Level, which for me has been under 50 for years. The reference range is 60 or higher. I believe I am officially in Chronic Three Kidney Disease, meaning my kidneys are functioning at a moderate level.

The bottom line is, if he doesn't worry about it, I don't either. Just try to eat well, and drink lots of water like you are. Also exercise, something I haven't been keeping up with the past two months because of a foot injury.

I only have had one bout of kidney stones and it seemed related to the Oxandrolone steroid pills. I usually have nandrolone injections but a couple of years back there was a shortage so I was put on the pill. That's when I had stones. I'm back on nandrolone injections with testosterone now, and haven't had any problem. Plus drink tons of water which seems key. Also take Calcium with Vitamin D which my doctor advised like Citracal.

Having stones is the worst experience. Next time I think I just have them extracted. Can't endure the pain. So my sympathy is with you when you get them.

Glad to here things are stable for you and please continue to check in.

I'm still having skin problems which are driving me nuts though. If it's not one thing it is another.

Well I have to say I am not having Kidney or Liver problems just yet! Been POZ officially since 89! I have the little red bumps that remind me of the sun poisoning that my mom use to get back when I was a kid at the Jersey shore. I at first though it was the same sun poisoning and then I realized it was not. I have not seen any of the doctor's you have all seen because of 1 the money and co pays M&M insurance sucks (medicare /medicaid) and two I feel some of these doctor's suck as well. They treat and treat and treat you according to books they read in college. Well this thing called HIV/AIDS is not that old and I am guessing most of us have had it longer then the doctor's treating us have been treating HIV/AIDS.Well now to my point of I also have a friend who suffers some of the same skin conditions we all do. He turned me on to just an over the counter allergy med. Now I am not saying it will work for any of you. Yet it works for me. and for most of his skin conditions.It is funny my doctor (when I showed him and asked) asked was I on antibiotic's. I find the ironic since he is my doctor and he would have been he one to prescribe antibiotic's and he was asking me if I was on any.Well I take equate. It is an over the counter 4 to 6 hr med from wally world (better know as wal-mart). I am guessing that my itch is not too bad as of yet considering I take one a day. I figure I take enough meds and well I do not really want to be taking another. It cost me $4.00 for 100 capsules and they are 25mg each.Well hope it may help. as well I will keep up with this so I can find out what will help when these stop working.Thanks for letting me have my say and good luck to allCraig

A little hard to talk about, but it seems we can chat just about anything. In the past month I've notice some real sensitivity in my old friend down there. Seemed kind of sore and little cuts appearing. Hard to explain. Then after relieving my self of some built up pressure down there one day, trying to be discreet here, it seems I broke out in some rash. After doing research it seems to be associated with some sort form of psoriasis. From photos I've seen it looks like Lichen Planus, or Lichen Sclerosus. How or why I got it I don't know. Haven't been sexually active for months, and haven't really done much else because of the sensitivity down there. Thought it would just go away.

With us, it's always hard to tell if it is HIV related... or what, but it just turned up so suddenly. See my derm on Tuesday.... Also got an appointment with a derm who is a Professor at a University here who specializes in HIV skin diseases. I've got a host of other skin problems we've discussed before, and dealing with them, but this one throws me. I've got a lot to go over with him, and I was lucky to have found him.

Jim, I hope you can get the the bottom of what this may be, in the past I've seen some derm docs, but found them all the be very dismissive of what they thought any type of HIV/AIDS skin problems might be,meaning that most all of them don't really believe that any of the skin problems can happen to us HIV/AIDS

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I went through a period of constant bruises a few years ago when I was on Viracept, Epivir and Zerit. Last year I was also getting red blotches on my arms. When I asked my DR. about it he just told me to wear long sleeve shirts. I guess that the meds can make the skin sensitive to sun.

My Doctor switched my meds to Prezista, Norvir and Truvada and I've noticed that this condition got better. The side affects aren't as bad either but I have to be observent because they can kick in later in the day if they kick in at all.

I'm on Prezista, Norvir among other things too. Not sure if I'm liking my current cocktail, but numbers are stable. Funny how everything looks stable according to your labs, but you feel like crap. That's my story right now.

As far as skin problems go, I have rashes and stuff all over the place. Who knows if it is the HIV, meds, environment....

As I stated before, I finally got into to see the assistant head of the Dermatology Department of a major University Medical Center here. He specializes in HIV skin diseases.

I will be sure to give you all a heads up after this appointment. May help us all!

I'm new to the boards but had to add to the discussion of folliculitis. Back in the good ole days of the mid 90s (just before the advent of PIs), I had a terrible struggle with folliculitis on my limbs. They were covered with red itchy bumps which I couldn't help but scratch of couse making things worse. The magic bullet turned out to be UV light! The second dermatologist I saw put me in a vertical tanning booth for a few minutes a few times a week. The change was DRAMATIC! Within a few months, the folliculitis had resolved.

I still have a type of folliculitis/mollluscum type thing on my forehead but during the summer it actually goes away as long as I am in the sun enough to get a little tan. Then, from about October to May (I'm in NY) the bumps come back. They aren't terribly visible but are concomitant with an annoying increase in the oil in the skin there.

Anyway, talk to a dermatologist about UV light therapy or just try getting some sun on a consistent basis. Good luck!

Damn Jeff, everything you have posted lately I seem to be getting. Stop it already LOL j/k

Today I noticed that I just broke out on my chest. It looks like a follicle thing, but I scared it might be the start of Shingles. But there is no rash really. Please God, don't let me have shingles. I'd rather stick needles in my eyes it would feel better than shingles.Damn, the last thing on my mind would be kidney trouble. I will call my DR today and see what he says. Luckily, I was just in there Thursday and did the full blood work up. Maybe something will show up. thanks for the tip on the kidneys Jeff, that was the last thing on my mind.

For the past month, I have had a weird butterfly like rash on my chin. It goes up to my lip, across my nose to the other lip. Fucking beautiful I am. LoL. The first thing i tasked the DR. "Lupus maybe?" he didn't think so. It's probably just good old "Holly Rot" as my DR in the 80's used to call it back then.

Shingles are the very worst, healthy or not, I agree with you Mark. I had my last bout on the left side of my face and in my ear canal. Just missed my eye. I had to take six weeks off work and grow a beard to cover the sores. Plus, my smile is a tad off, no one notices except for me really, because I think I had some nerve damage. Could have been MUCH worse.

And Jeffreyj, not trying to jinx you buddy. By putting stuff out there it's amazing to see other people are going through the same thing as you. One of the many advantages of this forum. Knowing you are not alone. You take care!!!

I hey Jim, it's been a while so I'd thought I keep you up to date about my kidney functions as of latejust got outta the doctors office yesterday, and I have a brand new Renal Dr. she told me what they think might be the problem, but 1st let me give you some of my levels, my Creatinine level is still high H 1.45 to H 1.48, but, the levels seem to be stable, and my kidney function is at 57% of normal, I'm now on a LOW SODIUM DIET, they think this will help me maintain good kidney functions, also they will be contacting me in regards to just what kidney Meds I should be on to help me out in the near future, I'll have another follow-up in 6 months form now.......so until then

« Last Edit: August 06, 2010, 10:05:25 AM by denb45 »

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I hey Jim, it's been a while so I'd thought I keep you up to date about my kidney functions as of latejust got outta the doctors office yesterday, and I have a brand new Renal Dr. she told me what they think might be the problem, but 1st let me give you some of my levels, my Creatinine level is still high H 1.45 to H 1.48, but, the levels seem to be stable, and my kidney function is at 57% of normal, I'm now on a LOW SODIUM DIET, they think this will help me maintain good kidney functions, also they will be contacting me in regards to just what kidney Meds I should be on to help me out in the near future, I'll have another follow-up in 6 months form now.......so until then

Dennis, thanks for the update. Sounds like you are stable which is good. I appreciate your keeping me up to date. A low sodium diet should help your levels I should think. I see my nephrologist in the next couple of months so I'll let you know what's going on with me. Thought I had a bout of kidney stones the past two weeks but pain subsided. See my urologist in a week. May have an untrasound just to be sure. By the way, is 57j% kidney function consider stage 3 chronic kidney disease? I think it has six stages? Talk to you soon

Damn Jeff, everything you have posted lately I seem to be getting. Stop it already LOL j/k

Today I noticed that I just broke out on my chest. It looks like a follicle thing, but I scared it might be the start of Shingles. But there is no rash really. Please God, don't let me have shingles. I'd rather stick needles in my eyes it would feel better than shingles.Damn, the last thing on my mind would be kidney trouble. I will call my DR today and see what he says. Luckily, I was just in there Thursday and did the full blood work up. Maybe something will show up. thanks for the tip on the kidneys Jeff, that was the last thing on my mind.

For the past month, I have had a weird butterfly like rash on my chin. It goes up to my lip, across my nose to the other lip. Fucking beautiful I am. LoL. The first thing i tasked the DR. "Lupus maybe?" he didn't think so. It's probably just good old "Holly Rot" as my DR in the 80's used to call it back then.

Just remember boys and girls: "And this too shall pass!"Fondly,Jeff

Sorry Jeff, I don't mean to be a jinx for you. I've been surprised to find on this forum how many people are going through a lot of the same stuff as myself.

I hope you don't have shingles. I thought I may be having a bout a few days ago. No pain though and it doesn't present itself as such. Seeing the derm Tuesday none the less. My upper back is scattered with weird red pustules which I guess is adult acne if there is such a thing.

I am concerned about the rash on your face. Generally the lupus rash presents itself as a butterfly shape across the cheeks and bridge of the nose. Might want to check with a rheumatologist and get your levels checked. I tested ANA positive a couple of years ago but it turned out to be a false positive. I had a rash too, but around my beard area, neck, and upper chest.

Dennis, thanks for the update. Sounds like you are stable which is good. I appreciate your keeping me up to date. A low sodium diet should help your levels I should think. I see my nephrologist in the next couple of months so I'll let you know what's going on with me. Thought I had a bout of kidney stones the past two weeks but pain subsided. See my urologist in a week. May have an untrasound just to be sure. By the way, is 57j% kidney function consider stage 3 chronic kidney disease? I think it has six stages? Talk to you soon

Well that 57% is actually not correct for a 53 yr old Black-Male w/ LT-HIV/AIDS according to my ID-Doctor she says, that's more like 68% for you w/ your body mass, and the amount of workouts & exercise I do, there was a formula she used, that went by Age & Race, if I were actually a WHITE MALEthat 57% would be more accurate ,so I'm not in stage 3 kidney disease, but, that I do have kidney disease, but, all is required for now is a low sodium diet, and to watch what I eat, and continue to stay healthy, so that is the good news I got today form my ID-Doctor just switching to a low sodium diet has already shown some improvements, I feel a lot better just getting rid of all the salt, that shit is my worst enemy

« Last Edit: August 12, 2010, 12:56:27 PM by denb45 »

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